'I’ve got two daughters, so it makes you think about their futures and if they will be affected’

Posted: Sunday 23 February 2020

A 54-year-old woman with a rare genetic form of macular disease has pledged to mark 2020 by taking on 20, 20-mile walks to help boost funding for research into the condition.

Jane Woodhead decided to take on the challenge after being diagnosed with pattern dystrophy seven years ago.

Jane said: “I first noticed an issue while reading a book on holiday in 2012. I thought there was a smudge on my sunglasses that was distorting the left hand page. I was struggling to clean it off, and it took a while for me to realise the smudge remained in my vision, even when my sunglasses were off.

“I’m quite lucky that my dystrophy is just outside my central field of vision, which I understand is quite unusual. It began in my left eye, but in the past couple of years, it’s also appeared in the right eye. I’ve really struggled with ocular migraines, which have been very debilitating.

“I’ve only found out about the Macular Society in the past year while doing my own research. The Society has been a really good resource for me because there isn’t really a lot of other information about my condition in the public domain.”

Pattern dystrophy is the umbrella term for a group of genetic retinal conditions in which a build-up of waste material causes damage to tissue in the eye. Different dystrophies cause different patterns of damage, which might look like egg yolks, butterflies or knotted fishing nets. People will usually have symptoms in both eyes, and may have a different pattern of damage in each. Symptoms generally worsen over 20 to 30 years and there is currently no treatment.

Jane said: “As pattern dystrophy is a genetic condition, I was particularly interested in doing something that helped with research; I’ve got two daughters, so it makes you think about their futures and if they will be affected the way I have been.

“I decided that a walking challenge around the theme of 2020 would be good; it links to 20/20 vision, and it can be 20 years or more with my condition before you begin to experience significant deterioration in your sight, so 20, 20-mile walks seemed ideal.”

Jane will be completing her first walk later this month, in a circular route from Greenwich through Central London.

She said: “I’m really looking forward to the first walk now. I’ve had lots of friends and family asking about donations; several local businesses have pledged their support too, so I’m really grateful for that. I’d like to raise at least £1,000 but I hope I’ll end up with more than that.”

If you would like to sponsor Jane, visit her JustGiving page here. She will also be writing a regular blog about her challenge and her eye condition.

Find out more information on taking part in fundraising events for the Macular Society.